University of Groningen
Supporting caregivers of stroke patients
Heuvel, Elisabeth Theodora Petronella van den
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Heuvel, E. T. P. V. D. (2002). Supporting caregivers of stroke patients: an intervention study s.n.
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CHAPTER 5
Long Term Effects of a Group Support
Program and an Individual Support Program
for Informal Caregivers of Stroke Patients:
Which Caregivers Benefit the Most?
Elisabeth TP van den Heuvel, Luc P de Witte, Roy E Stewart, Lidwien M Schure,
Robbert Sanderman and Betty Meyboom-de Jong
Accepted for publication in Patient Education and Counseling (in press)
Abstract
Objective: In this article we report the long-term outcomes of an intervention for informal caregivers who
are the main provider of stroke survivors’ emotional and physical support. Based on the stress-coping
theory of Lazarus and Folkman two intervention designs were developed: a group support program and
individual home visits. Both designs aimed at an increase in caregivers’ active coping and knowledge,
reducing caregivers’ strain and improving well-being and social support.
Subjects: Participants were mainly spouses and women. Their average age was >60 years. A total of 212
caregivers participated in the intervention.
Methods: Caregivers were interviewed before entering the program, and one month and six months after
completion of the program. After six months 100 participants remained in the group program, 49 in the
home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to
determine the effects of the interventions.
Results: In the long term, the interventions (group program and home visits together) contributed to a
small to medium increase in confidence in knowledge and the use of an active coping strategy. The
amount of social support remained stable in the intervention groups, whereas it decreased in the control
group. The same results were found when the group program was compared with the control group. No
significant differences were found, however, between the home visit group and the participants in the
group support program.
Younger female caregivers benefit the most from the interventions. They show greater gains in
confidence in knowledge about patient care and the amount of social support received compared with
other caregivers.
Conclusion: The intervention program described in this study should be offered mainly to younger
female caregivers, since this group appears to benefit the most from the program. Effects of the
intervention on other outcome measures, such as well-being and strain, would perhaps require longer
support programs or a combination of a support program with day-care.
Chapter 5
5.1
Introduction
Informal caregivers of stroke patients experience high levels of burden. Especially long-term
caregivers of stroke patients often experience feelings of isolation and depression.1, 2 There is
evidence from earlier research that caregivers’ situations can be improved by teaching them
active coping strategies, and by educating them about the disease.3-7 In this article we report
the long-term outcomes of two interventions for caregivers of stroke patients that focused on
these two aspects. The program was based on the stress-coping theory of Lazarus and
Folkman.8 In the literature we did not find any comparable intervention study that
investigated the long-term effects on caregivers of stroke patients.
Between 1995 and 1997 we organized a group support program and an individual support
program (home visits) for caregivers of stroke patients in four regions of the Netherlands. The
program was aimed at caregivers of patients who had suffered a stroke between 6 months to
three years before the intervention. A period of three years post-stroke was based on earlier
studies, showing that caregivers still ask for support in the long term. Greveson found that
three years after stroke, patients and their carers desired a more comprehensive kind of
support than only physical rehabilitation. To come to terms with the changes in their life
patients and carers indicate that they need post-discharge support, counseling and
information.9 Dowswell examined the problems faced by stroke patients and their caregivers
in relation to time. He found that in the early stage caregivers of stroke patients mainly asked
for practical support, whereas the need for psychological support increased over time.10
The primary aim of both programs was to enhance caregivers’ active coping and confidence
in knowledge. The secondary aim of the programs was to influence caregivers’ well-being by
reducing strain and improving mental well-being, assertiveness, vitality, the amount of social
support and satisfaction with social support.
In the short term we found an increase in confidence in knowledge about patient care and in
the use of two active coping strategies, i.e. confronting (confronting a problem, analyzing the
problem and (taking) possible actions) and seeking social support in the intervention group as
a whole (group program and home visits together) compared with the control group. The
increase in seeking social support was small. The outcomes were similar in the group program
and the control group. Comparison between the home visit group and the control group
demonstrated a medium effect of the intervention both regarding confidence in knowledge
about patient care and the use of confronting and seeking social support.
Our primary long-term aims were to achieve an increase both in knowledge and the use of
active coping strategies compared with baseline results, and persistence of the short-term
results. The secondary long-term aims were to obtain a decrease of strain, and an increase in
vitality, mental well-being, social support, satisfaction with social support and assertiveness
in caregivers compared with baseline data. The short-term outcomes showed no improvement
for any of the secondary aims.
This does not necessarily rule out the possibility of positive long-term effects, because these
effects may take relatively long to become manifest. We also investigated which caregivers
appear to benefit the most from the intervention programs.
72
Long term effects of a group program and an individual program
The following research questions were addressed:
1. What are the long term effects of interventions for caregivers of stroke patients on the
outcome variables caregivers’ confidence in knowledge, the use of active coping
strategies, strain, mental well-being, vitality, assertiveness, and social support?
2. Which program, the group support program or the individual support program (home
visits), has the greater impact on these outcome variables?
3. Which caregivers benefit the most from the interventions?
5.2
Methods
5.2.1
Subjects
We recruited caregivers who were the main caregiver of a non-institutionalized stroke patient
and who had a close relationship with the patient (i.e. family, friend, acquaintance) and was
the main provider of the stroke survivor’s emotional and physical support.
The stroke patients in the study had suffered their first stroke between July 1992 and July
1996. They were >45 years old at the time of the first stroke. These criteria were chosen to
obtain a homogeneous group of participants with comparable caregiving responsibilities.11
Caregivers were recruited through general practitioners, hospitals, home care services, patient
organizations, rehabilitation clinics and the media between February 1995 and June 1996.
Caregivers who met the criteria and were willing to participate were randomly assigned, in
blocks of 8-13 caregivers, to an 8-week group program (8 meetings, 16 hours of education),
or an 8-10 week home visit program (4 visits, 8 hours of education), or the control group.
Our study had a longitudinal controlled design. In all four regions the first two blocks of
caregivers were assigned to the group program (since two consecutive group programs were
organized in each region), the third and fourth blocks of caregivers were assigned to the home
visits and the fifth and sixth blocks were assigned to the group program. In each region the
last block of caregivers was assigned to the control condition.
The intervention started within four weeks after the baseline interview (T1). The short-term
interview (T2) took place one month after completion of the program (approximately 14
weeks after the first interview) and the long-term interview took place six months after T2.12
5.2.2
The intervention
The intervention was based on three elements: expressing emotions, receiving information,
and learning how to use active coping strategies. At the start of the program, participants
talked about their emotions regarding the occurrence of the stroke, and the period
immediately following the event. The program continued with information about the causes of
stroke and its progress. The consequences for patient and caregiver, and the relationship with
their social network were discussed also. Caring for the patient (lifting techniques, resources
etc.) was another topic. Subsequently, the participants learned how to look after themselves
(handling stress, achieving a healthy life style etc.).
Active coping was stimulated by asking participants about their problems in relation to
various themes. During each session participants were encouraged to cope with their
problems in an active way.
73
Chapter 5
The group program and the home visit program were similar in content. The only difference
was that fewer topics were dealt with during one group session (8 two-hour sessions in total)
than during one home visit (4 two-hour sessions in total).
Health education nurses from the home care services supervised the group programs. These
nurses had experience in guiding patient and/or caregiver groups. Specialized district nurses
supervised the home visits. These nurses had experience in visiting individual patients and
caregivers.
All nurses took part in a one-day training program focused on the intervention. The contents,
methods, and structure of both interventions were published in a guide that was used by all
nurses. The quality and consistency of the execution of the program were monitored using
logbooks. Each nurse filled out a (structured) logbook for every individual or group session.
The logbooks were sent to the researchers, who monitored them. If there were problems the
researchers contacted a nurse. After several months a meeting was organized where nurses
and researcher could talk about their experiences and problems.
5.2.3
Assessments
A new instrument (30 items) was developed for the assessment of confidence in knowledge.
Exploratory factor analysis based on the eigenvalues and explained variance showed that the
instrument consisted of two factors: one factor representing confidence in knowledge about
disease, resources, and patient care (confidence in knowledge about patient care, alpha= .94),
and another factor representing confidence in knowledge about self-efficacy (alpha= .86). The
two factors together explained 49.5% of the total variance.
Coping strategies were measured with a short version of the Utrecht Coping list (explained
variance 54.8%).13 Two factors were used, i.e. confronting (confronting a problem, analyzing
the problem and (taking) possible actions; five items, alpha=.81) and seeking social support
(five items, alpha=.73).
The Short Form-36 was used to measure physical well-being (10 items, alpha=.92), mental
well-being (five items, alpha=.88), and vitality (four items, alpha=.78).14, 15 Strain was
measured using the Caregiver Strain Index (13 items, alpha=.80).16
Adapted versions of the Social Support List-Interaction (five items, alpha=.66) and the Social
Support List-Discrepancy (five items, alpha=.73) were used to evaluate the amount of social
support and satisfaction with social support.17 Five different types of social support
(emotional support in case of problems, appreciation support, instrumental support, social
companionship, informative support) were each evaluated by two items. One item evaluates
the amount of support caregivers receive (four-point scale), and one item evaluates
satisfaction with the amount of support (four-point scale).
Assertiveness was measured with a questionnaire that was developed for this study.
Exploratory factor analysis (15 items) yielded two factors. In view of the contents of the
items, however, we decided to use the questionnaire as a whole. Removal of items with a low
communality resulted in an 11-item questionnaire (alpha=.81). The 11 items explained 47.2%
of the variance.
Demographic variables were recorded, like caregiver’s gender and age, patient’s gender,
income, time of stroke and socioeconomic status. Socioeconomic status was measured with
the Occupational Prestige Scale, developed by Sixma and Ultee.18
The physical, psychological, and behavioral consequences of stroke were assessed in an
interview with the patient using the Sickness Impact Profile-68 (68 items, alpha=.92).19 The
74
Long term effects of a group program and an individual program
caregiver was asked about the psychological consequences of stroke using an instrument that
focuses on the cognitive consequences of stroke (six items, alpha=.84), the emotional
consequences (6 items, alpha=.82), and the behavioral consequences (5 items, alpha=.69)
(explained variance 53.9%).2
5.2.4
Analyses
T-tests were used to determine changes over time (T1-T3). Multiple stepwise regression
analysis was performed to determine the relative influence of the two interventions. The
regression model included three possible confounders based on correlations between those
variables that differed between groups at T1 and correlated significantly with outcome
variables at T3: caregiver’s age and physical functioning, and the pre-intervention score for
all outcome variables.
Subsequently, two analyses were performed. First, the general effects of the interventions
(group program and home visits versus control group) were analyzed and, secondly, the
differential effects of the group program and the home visits (group program versus control
group, home visits versus control group, and group program versus home visits) were
analyzed.
All analyses were repeated after removal of the non-completers, i.e. the participants that
attended fewer than five group sessions or received fewer than three home visits. The
characteristics of the caregivers in the final study group were compared with those of the
caregivers who dropped out of the program.
To determine the magnitude of the change in the outcome variables, effect sizes were
calculated by dividing the difference between the mean scores at t3 and t1 by the standard
deviation of the difference.20
To determine which caregivers profit the most from the intervention, Pearson Correlations
were calculated between caregiver characteristics and the change scores (T1-T3) for the
outcome variables that differed significantly between the experimental group and the control
group. Separate analyses were performed for the intervention group as a whole (group support
program and home visits together) and the control group. For the variables socioeconomic
status, age, gender, the duration of caregiving, living arrangement (living in the same house as
the patient or elsewhere), and type of relationship (spouse, daughter, friend etc.) correlations
were calculated with the change score (score at T3 minus score at T1) of the outcome
variables.
In the results section the effects are described for three groups: 1) all caregivers that received
an intervention (group program and home visits together); 2) caregivers who participated in
the group program (group program), and 3) caregivers who received home visits (home
visits).
75
Chapter 5
5.3
Results
5.3.1
Subjects
A total of 257 caregivers were randomized, in blocks, to one of the interventions or to the
control group. Shortly after randomization or during the first interview 45 caregivers dropped
out. Of the remaining 212 caregivers, 110 participated in the group program and 60 entered
the home visit program. The control group consisted of 42 caregivers. The majority of the
participants were women (N=155), mostly partners (N=201) of the patient. The mean age of
the caregivers was 64 years (SD=10.14), and their socioeconomic status was middle class.
Caregivers’ physical functioning and mental well-being were moderate. Stroke had occurred
approximately 3.5 (SD=3.81) years before the study. Patients experienced moderate to severe
stroke-induced emotional, cognitive, and behavioral changes. Consequences from stroke were
moderate to severe (see table 1).
T a b l e 1 : In itia l c a r e g iv e r c h a ra c te ris tic s
I n itia l c a r e g iv e r c h a r a c te r is tic s
C o n tr o ls
G rou p p rog ram
H o m e v is its
(n = 4 2 )
(n = 1 1 0 )
(n = 6 0 )
M a x .R a n g e
C a r e g iv e r c h a r a c te r is tic s
G e n d e r c a re g ive r ( % fe m a le )
7 1 .4
7 4 .5
7 1 .7
M e a n a g e c a re g ive r* *
6 0 .8
6 6 .4
6 3 .2
% lo w ( < € 12 00 )
4 5 .0
6 5 .0
5 8 .9
% h ig h ( > € 1 20 0 )
5 5 .0
3 5 .0
4 1 .2
M e a n so c io -e co n o m ic sta tu s
4 4 .1
4 6 .4
4 5 .5
0 -1 0 0
M e a n p h ysic a l h e a lth * *
7 3 .1
6 4 .8
7 4 .1
0 -1 0 0
7 1 .4
7 4 .5
7 1 .7
% < 3 ye a rs
5 1 .2
4 0 .9
4 6 .7
% > 3 ye a rs
4 8 .8
5 9 .0
5 3 .3
2 6 .1
2 6 .5
2 8 .0
0 -6 8
E m o tio n a l c o n se q u e n c e s
1 2 .2
1 2 .3
1 2 .1
6 -2 4
C o g n itive c o n se q u e nc e s
1 2 .8
1 3 .4
1 2 .3
6 -2 4
9 .8
1 0 .1
1 0 .2
5 -2 0
In c o m e * :
P a tie n t c h a r a c te r is tic s
G e n d e r p a tie n t ( % m a le )
T im e o f stro ke :
S ic kn e ss Im p a c t P ro file ( S IP 68 )
P syc h o lo gic a l c on se q u e n c e s o f stro ke :
B e h a vio ra l co n se q u e n c e s
p < .1 0, * *p < .05 , te ste d w ith C h i S q u a re a n d A N O V A
At T2, there were 212 participants, 25 of whom dropped out after T2 (10 from the group
program, 11 from the home visit group, and 4 from the control group). At T3, the number of
participants was 187: 100 in the group program, 49 in the home visit group, and 38 in the
control group.
Compared with the participants who completed the intervention, the drop outs were older
(p<.001), took care of an older patient (p<.001), were in less good physical health (p<.01),
76
Long term effects of a group program and an individual program
and indicated that they had less confidence in knowledge about patient care (p<.05) and self
efficacy (p<.05).
5.3.2
Effect measures
General effects
The paired t-tests showed an increase in confidence in knowledge about patient care (p<.001)
and self-efficacy (p<.001) (table 2) in the caregivers in the group program and in the home
visit group together. The caregivers who participated in the group program became more
confident in knowledge about patient care (p<.001) and self-efficacy (p<.001). The caregivers
in the home visit group became more confident in knowledge about patient care (p<.05) and
self-efficacy (p<.001), and sought more social support at t3 (p<.05). The caregivers in the
control group showed a decrease in the amount of social support (p<.05), whereas they
showed an increase in satisfaction with social support (p<.05).
T a b l e 2 : C h a n g e o f e ffe c t m e a s u r e s in n o n -c o m p le t e rs (T 1 -T 3 )
Effe ct m e a su re s
C o n tr o ls
G rou p p rog ra m
H o m e v is its
B o th in te r v e n tio n s
(N = 3 3 )
(N = 9 2 )
(N = 4 0 )
(N = 1 3 2 )
T1
T3
T1
T 3
T1
T3
T1
T3
P r im a r y e f f e c t m e a s u r e s
C o n fid e n c e k n o w le d g e p a tie n t c a re
6 8 .9
C o n fid e n c e k n o w le d g e s e lf e ffic ac y
1 9 .6
+ 0 .8
1 8 .2
S h o rt v e rs io n U C L : c o n fro n t
1 3 .7
+ 0 .1
1 3 .4
9 .1
+ 0 .1
9 .8
+ 0 .3
9 .3
C a re g iv e r S tra in In d e x
2 6 .3
+ 0 .1
2 6 .5
-0 .9
2 5 .5
S F -3 6 : m e n ta l w ell-b e in g
2 0 .4
+ 0 .4
1 9 .9
+ 0 .1
S F -3 6 : v ita lity
1 5 .4
-0 .2
1 4 .4
+ 0 .1
A d ju s te d v e rs io n S S L -I
1 0 .5
-0 .9 *
1 0 .2
A d ju s te d v e rs io n S S L -D
8 .7
+ 0 .4 *
8 .2
+ 0 .2
8 .7
C a re g iv e r A s s e rtiv e n e s s
3 4 .7
3 4 .2
-0 .2
3 4 .5
S h o rt v e rs io n U C L : s e e k s u p p o rt
+ 0 .8
6 3 .0
+ 8 .3 * *
6 8 .0
+ 4 .9 *
6 4 .6
+ 7 .2 * *
+ 1 .8 * *
1 9 .1
1 .8 * *
1 8 .5
+ 1 .8 * *
0
1 3 .1
1 3 .3
+ 0 .1
9 .6
0 .5
-0 .3
2 6 .2
-0 .7
2 1 .1
+ 0 .5
2 0 .3
+ 0 .2
1 5 .9
+ 0 .5
1 4 .9
+ 0 .2
1 0 .0
+ 0 .1
1 0 .2
-0 .1
0
8 .3
+ 0 .2
-0 .7
3 4 .3
-0 .4
+ 0 .3
+ 0 .8 *
S e con d a ry e ffe ct m e a su re s
-1 .2
0
* p < .0 5 , * * p < .0 0 1 , te s te d w ith p a ire d t-te s t
77
Chapter 5
Two confounders were included in the regression model (table 3 and 4): 1) caregiver’s age,
which correlated with confidence in knowledge about patient care (r=-.13, p<.10), the coping
strategy confronting (r=-.16, p<.05), the coping strategy seeking social support (r=-.22,
p<.001), strain (r=-.16, p<.05), and the amount of social support (r=-.18, p<.05) and 2)
caregiver’s physical functioning, which correlated significantly with confidence in knowledge
about patient care (r=.20, p<.01), confidence in knowledge about self efficacy (r=.26,
p<.001), use of the coping strategy confronting (r=.20, p<.01), use of the coping strategy
seeking social support (r=.20, p<.01), mental well-being (r=.36, p<.001), vitality (r= .47,
p<001), and satisfaction with social support (r= .19, p<.01).
The regression analysis showed that the group program and home visits together contributed
significantly to the increase in confidence in knowledge about patient care (p<.001), use of
the coping strategy seeking social support (p<.05), and the amount of social support (p<.01)
in the participants in the intervention groups compared with the control group. No effect of
the interventions was found on confidence in knowledge about self-efficacy, and use of the
coping strategy confronting.
Differential effects
The differential analysis showed significant effects on confidence in knowledge about patient
care (p<.001), seeking social support (p<.05), and the amount of social support (p<.01) in the
group program only. However, these effects were not large enough to demonstrate significant
differences between the group program and the home visits.
The per protocol analysis showed a significant positive effect of the home visits on
confidence in knowledge about patient care (p<.05). The home visits were found to have a
significant effect on the use of the coping strategy seeking social support, whereas such an
effect was not found for the group program. In the home visit group a significant positive
effect was found on vitality (p<.05), although this effect was not large enough to demonstrate
differences between the group program and the home visits.
T a b l e 3 : m u ltip le r e g r e s s io n a n a ly s is : p rim a r y e ffe c t m e a s u re s
I n d e p e n d e n t v a r ia b le
V a lu e e ffe c t m e a s u re T 1
A g e c a re g iv e r
C o n f . in k n o w le d g e
C o n f . in k n o w le d g e
C o n f r o n tin g
S e e k in g s o c ia l
p a tie n t- c a r e T 3
s e lf - c a re T 3
T3
su p p ort T2
(N = 1 6 4 )
(N = 1 6 2 )
(N = 1 6 2 )
β
β
.4 8 * * *
.4 9 * * *
(N = 1 6 1 )
β
.5 9 * * *
β
.5 8 * *
-.1 2
-.1 2
-.0 6
-.1 1
P h y s ic a l fu n c tio n in g c g
.0 9
.0 9
.1 4
.1 4
A d ju s te d R 2
.2 6
.2 8
.3 8
.3 9
In te rv e n tio n s -c o n tro ls
.2 0 * * *
.0 7
-.0 1 *
A d ju s te d R 2
.2 9
.2 8
.3 8
G ro u p p ro g ra m -co n tro ls
.2 7 * * *
.0 8
-.0 2
.1 6 *
H o m e v is its -c o n tro ls
.1 6
.0 9
-.0 1
.1 3
G ro u p p ro g ra m -h o m e v is its
.0 6
-.0 4
-.0 1
.0 1
A d ju s te d R 2
.2 9
.2 8
.3 7
.4 0
G e n e r a l e f f e c t a n a ly s is
.1 3 *
.4 0
D if fe r e n tia l e f f e c t
a n a ly s is
* p < .0 5 , * * p < .0 1 , * * * p < .0 0 1
78
Long term effects of a group program and an individual program
T a b l e 4 : R e s u lts o f t h e m u ltip le s te p w is e r e g r e s s io n a n a ly s i: s ec o n d a ry e ffe c t m e a s u re s
I n d e p e n d e n t v a r ia b le
S tr a in
M e n ta l w e ll-
V ita lity
A m ou n t so c.
S a tis f a c tio n s o c .
A s s e r tiv e n e s s
T3
b e in g T 3
T3
su p p ort T3
su p p ort T3
T3
(N = 1 6 4 )
(N = 1 6 4 )
(N = 1 6 3 )
(N = 1 6 4 )
(N = 1 6 3 )
(N = 1 8 9 )
β
β
V a lu e e ffe c t m e a su re T 1
.7 1 ** *
A g e c a re g ive r
.0 4
.6 0 ** *
P h ysic a l fu n c tio n in g c g
-.0 4
.1 7 **
A d ju ste d R 2
.4 9
In te rve n tio n s-c o n tro ls
A d ju ste d R 2
-.0 2
.6 5 ** *
-.0 5
β
β
β
.5 7 ** *
β
.6 3 ** *
.4 7 ** *
-.1 7
-.0 2
-.0 7
.1 6 **
.0 4
.0 7
.7 4
.4 5
.5 4
.3 3
.4 0
.2 1
-.0 8
-.0 1
.0 5
.1 8 **
-.0 9
.0 9
.4 9
.4 4
.5 4
.3 6
.4 0
.2 1
G ro u p p ro g ra m -co n tro ls
-.1 0
-.0 3
.0 3
.2 4 **
-.1 0
.1 3
H o m e visits-c o n tro ls
-.0 7
.0 1
.1 0
.1 4
-.0 9
.0 5
G ro u p -h o m e visits
-.0 1
-.0 4
-.0 7
.0 6
.0 0
.0 8
A d ju ste d R 2
.4 8
.4 4
.5 4
.3 6
.4 0
.2 1
G e n e r a l ef f e c t a n a ly s is
D if fe r e n tia l ef f e c t a n a ly s is
* p < .0 5, ** p < .0 1 , * ** p < .00 1
Effect sizes
Table 5 shows that the effects of the intervention programs were small to moderate. In the
intention to treat group, both interventions together had a medium effect on confidence in
knowledge about patient care. The group program also had a medium effect on this variable.
In the per protocol group, the effects were somewhat stronger than in the intention to treat
group. The home visits appeared to have a medium effect on the variables confidence in
knowledge about patient care and seeking social support. The home visits also had a small
effect on the variable vitality.
Caregivers who benefit the most
According to the correlation analysis (table 6) in the intervention group (group program and
home visits together) the increase in confidence in knowledge about patient care was higher
for younger caregivers (r= -.22, p<.05) and for female caregivers (r=.18, p<.05). For the
variable seeking social support no significant correlations were found.
The amount of social support also increased more in younger caregivers (r= -.26, p<.01) and
in female caregivers (r=.18, p<.05). The other outcome variables demonstrated no significant
correlations with caregiver characteristics. In the control group no significant correlations
between caregiver characteristics and changes in outcome variables were found.
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Chapter 5
Tabel 5: Effect size for the intentio n to treat group, per protocol group, and co ntrol group
Interventions
Confidence
Seeking
Am ount of
knowledge
support
support
Vitality
patient care
Intention to treat group
Interven tion (group + home visits)
0.62
0.16
-0.007
0.079
Group program
0.72
0.09
-0.012
0.022
Home visits
0.42
0.39
0.017
0.30
Interven tion (group + home visits)
0.75
0.16
-0.026
0.14
Group program
0.92
0.07
-0.030
0.07
Home visits
0.46
0.42
0
Control group
0.08
0.02
0.43
Per protocol group
0.30
-0.088
Small effect .20-.49, medium effect .50-.79, large effect >.80 (28)
Table 6: Pearsons correlations of change o ver tim e in o utcom e variables and caregiver characteristics
Knowledge disease
Seeking social support
Am ount of social support
resources, care patient
Experim ental
Control
Experim ental
Control
Experim ental
Control
R
R
R
R
R
R
SES
-0.03
-0.07
-0.020
0.09
Age
-0.22**
-0.03
-0.14
0.11
-0.26**
-0.18
0.18*
0.08
0.12
0.15
0.18*
0.33
Duration care
0.01
0.30
-0.026
-0.20
Living circums.
0.10
-0.09
0.08
0.006
-0.15
-0.03
Gender
0.06
-0.31
1=male
2=male
Type relationship
80
-0.006
0.07
Long term effects of a group program and an individual program
5.4
Conclusions and discussion
In the long term the interventions (group program and home visits together) contributed to the
main goals of this study: increasing caregivers’ knowledge, increasing the use of active
coping strategies, and increasing social support received by caregivers. The long-term effects
were small to medium.
Younger female caregivers appear to benefit the most from the interventions. They showed a
greater increase in confidence in knowledge about patient care and the amount of social
support they received compared with other caregivers.
The interventions had no effect on caregivers’ physical or mental wellbeing. Also, no
significant differences were found between the two designs, the home visits and the group
support program.
Some differences were found between the short-term effects and the long-term effects. In the
short term we found an effect of the interventions on the coping strategy confronting.
Apparently, participants were unable to continue to use this strategy in the longer term. In the
short term we found no difference between the experimental and the control group for the
amount of social support. In the long term, however, caregivers in the control group showed a
significant decrease in the amount of social support they received, whereas the participants in
the interventions maintained the level of social support they had at T1.
The long-term effects were somewhat weaker than the short-term effects.12 This is consistent
with intervention studies with caregivers of dementia patients.21
It is somewhat disappointing that the long-term effects are limited to an increase in
confidence in knowledge about patient care, the use of one active coping strategy, and the
amount of social support. We were also expecting small effects on more general aspects of
well-being, because the theory of Lazarus and Folkman predicts that the use of active coping
strategies leads to increased well-being.8
The absence of these effects in this study may be due to the fact that our measurement
instruments are not sensitive enough to measure changes in well-being variables over time.
The duration of the intervention may also have played a role. It is plausible that 8 hours
(home visits) and 16 hours (group program) of education are not sufficient to achieve effects
on well-being variables. Furthermore, the effects of the interventions on general well-being
would probably have been larger if we had included only caregivers with high strain levels
and low mental well-being.
It seems unlikely that the absence of these effects is attributable to the intervention as such or
to the way it was carried out. The logbooks of the supervising nurses show that coping and
education featured very prominently in the programs. Participants’ subjective evaluations of
the program were very positive.
The chance of positive effects on wellbeing may have been reduced by the fact that a
substantial part of the caregivers had had their stroke more than three years ago at the time of
inclusion. Shortly after stroke, stress levels for caregivers and patients are very high. Offering
an intervention at that time could have had more effect. On the other hand, as was stated in
the introduction, also in the longer-term caregivers need psychological support, information,
and still experience problems and stress.
Apparently, a program focused on coping and information is not enough to bring about
positive effects on the well-being of caregivers of stroke patients. Often these caregivers live
in difficult circumstances. Many caregivers told the researchers that it was very hard for them
to find the time to participate in the intervention. During the program we stimulated
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Chapter 5
caregivers to take time for a hobby or to organize social support et cetera. Caregivers may
have been unable to do so. Perhaps an intervention that combines a program focused on
coping and information with several hours a week of day-care for the patient would have a
positive effect on caregivers’ well-being. The importance of doing things for oneself was
shown in a study by Nieboer, who concluded that it is not the care activities as such that
reduce well-being in caregivers but the fact that caregivers are no longer able to engage in
activities that are important to them.22 The lack of effects on well-being in this study is not
unique. Only few studies have reported positive effects of similar interventions on well-being
variables.21
We did not find any significant differences between the group program and the home visits.
We expected that the group program would have a greater impact on social support than the
home visits, considering that the group program offers participants more opportunity for
contacts with other caregivers. Perhaps the duration of these contacts was too short for
participants to increase their social support level. During the group program we stimulated
participants to maintain contact after the program.
This may have been difficult because the group programs were organized for caregivers of
stroke patients in fairly large regions, and distances may have been too long for participants to
keep in touch afterwards. It is also possible that the recipients of the home visits experienced
the same level of support as the participants in the group program, because they received
more attention from the nurse who supervised the intervention. The most plausible
explanation for the absence of differences in social support between the group program and
the home visits is the small number of respondents included in the home visit group.
Although we have no explanation for the decrease in social support, and the increase in
satisfaction with social support in the control group, the finding as such is not surprising. A
large amount of social support does not necessarily result in high satisfaction with social
support. People who receive little but adequate support often show higher satisfaction levels
than those with a large network who receive inadequate support.
Younger females were found to profit most from the intervention. It may be that younger
female caregivers are more used to expressing their problems to others, and receiving advice
from others. Furthermore, the research population consisted mainly of women. This may have
had disadvantages for the male caregivers who participated in the group program, since men
and women often experience their caregiver role in a different way.
A comparison of our study group with caregivers of stroke patients in the Netherlands gives
rise to the following conclusions. The majority of stroke patients in the Netherlands are
approximately 65 to 85 years old.23 If we assume that their spouses are in about the same age
range, this would mean that the caregivers in our study, whose mean age is 64 years, are
relatively young. In the Netherlands the majority of stroke patients have low socioeconomic
status, whereas in our study most caregivers had a moderate socioeconomic status.24-26 Thus,
the study population appears to be relatively young and from a relatively high socioeconomic
group compared with caregivers of stroke patients in the Netherlands in general.
Not many studies have evaluated long-term effects of support programs. We think this is
mainly due to the small numbers of caregivers that are included in intervention studies and
high drop out rates. Future studies should focus on recruitment of large numbers of
respondents. Only in this way will we be able to make an adequate assessment of the longterm effects of interventions and identify which caregivers should be targeted by a specific
intervention. A less strict selection of respondents could be a solution for the recruitment
problem. It may also be possible to develop general interventions focusing on caregivers of
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Long term effects of a group program and an individual program
different patient groups. Caregivers of certain patients have many problems in common,
which may be discussed in general sessions, whereas problems linked to a specific disease
could be discussed in separate groups.
We conclude that our intervention programs achieved positive long-term effects on
caregivers’ confidence in knowledge and the use of an active coping strategy. Effects on other
outcome measures, such as well-being and strain, would perhaps require longer support
programs. A combination of a support program with day-care might also result in a positive
effect on caregivers’ well-being.
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